Insights from our 2026 State of the Community Survey

Each year, the Parkinson’s Foundation surveys the Parkinson’s disease community to learn what topics matter most and what support people need.

Results from our 2026 State of the Community Survey guide Parkinson’s Foundation programs and resources, ensuring we stay focused on what matters most to people affected by PD.

This year, more than 9,000 people (people with PD, care partners, family members, friends and health professionals) took the survey in English and Spanish —up 30% from 2025. Responses came from all 50 states and from people outside the U.S., giving us valuable insight into the experiences and needs of our global Parkinson’s community.

Below are key findings from this year’s survey.

1. Understanding symptoms, medications, and treatments remain top priorities.

Survey participants continue to mention movement symptoms, non-movement symptoms ,and knowledge about medications and treatment options as top concerns. More than half identified movement symptoms (61%) and non-movement symptoms (52%) as most concerning, especially tremor, gait and balance, sleep, mood and cognition.

Participants expressed strong interest in learning more about symptom management and treatment options. Similarly, Spanish-speaking community members were most interested in research updates and treatments options.

Key takeaway

People want clear, trusted information about symptoms, treatment options and research. We will use these findings to guide future education and programs.

Visit our PD Library to explore topics that matter most to you.

2. Uncertainty about what to discuss during medical appointments and barriers to care continue to impact the community.

A big challenge during appointments is knowing which symptoms and questions to ask the PD doctor, and many find it hard to talk about mental and emotional health. Similar to last year, most people said they spend 15–30 minutes with their provider.

“I believe in narrative medicine, where I encourage patients to share their Parkinson’s story — focusing on the symptoms affect them the most and working together to create a personalized care plan that empowers them to take an active role.”

— Sneha Mantri, MD, Parkinson’s Foundation Chief Medical Officer

About 25% of respondents went to the emergency room or stayed in the hospital in the past year, and only 38% knew about the Parkinson’s Foundation Hospital Safety Guide.

Although most reported not having barriers to care, others said it can be hard to get services and support. In the English survey, the most common barriers were:

• Not knowing what services are available or how to get them
• Trouble getting appointments
• Having to travel far to get care

For Spanish-speaking participants, the cost of services was the top barrier, while other challenges included language, transportation and not having enough services available.

Key takeaways

Medical appointments can feel overwhelming, especially as symptoms change over time. These findings show a need for tools and resources that help people feel ready and more confident during healthcare visits. Learn how to make the most of your care.

Getting Parkinson’s care looks different for everyone. Understanding barriers of accessing quality care helps us see where more education, support and outreach are needed.

3. Awareness of PD GENEration is growing, but research participation gaps remain.

In the English survey, half of participants had heard of PD GENEration: Powered by the Parkinson’s Foundation, compared to only 33% among Spanish-speaking community members. But hearing about it doesn’t always mean participating in the study. About 60% of people who were aware and eligible took part in PD GENEration, with substantially fewer Spanish speakers taking part (32%).

Outside of PD GENEration, most respondents said they have not participated in clinical research studies.

Key takeaway

These findings show we can do more to explain clinical research and help people understand how to take part in research studies, including in PD GENEration.

PD Trial Navigator is a new program that helps connect PD GENEration participants to relevant studies, while providing personalized support throughout the process.

4. People are seeking trusted information, support and community resources.

Participants shared that the Parkinson’s Foundation website, Parkinson.org, was the most-used resource. Spanish-speaking community members also highlighted online education programs, including webinars and Expert Briefings, as most helpful.

Reflecting on the resources that have been most helpful, participants also pointed out areas that were missing, or underrepresented, in their community, particularly around exercise programs and emotional health resources.

When asked about the policy issues that matter most, participants identified increasing research funding and improving the review and approval process for new treatments as top priorities.

Digital tools may help with learning, tracking symptoms and managing care, yet many participants (60–70%) said they do not know about these tools or do not use them.

Key takeaway

These findings show why it’s important to have trusted, easy-to-use resources that support learning, emotional health, connection and confidence throughout the Parkinson’s journey. Explore our blog for the latest information.

Learn more about our policy and advocacy priorities here.

What These Results Mean for Our Community

In both the English and Spanish surveys, we saw common themes:

• People want education about symptoms and treatment options.
• Many people need more help getting care and talking with their doctor.
• More people are hearing about research, but few are joining studies.
• People want trusted information and support.

These results remind us that living with Parkinson’s, caring for someone with Parkinson’s and connecting with the PD community look different for each person. Hearing directly from the community helps us keep improving our programs, education and resources.

Next Steps

The Parkinson’s Foundation will keep listening and responding to the community’s needs and priorities. We will keep working to advance our mission and make life better for everyone affected by PD.

While no single survey can capture the full range of experiences within the Parkinson’s community, the insights shared through surveys like the State of the Community Survey help guide our programs, resources, research, and advocacy efforts. That is why we continue to seek feedback in multiple ways and encourage people with Parkinson’s, care partners, and family members to join our survey initiative and participate in future surveys.

To help shape future Parkinson’s Foundation initiatives and ensure your voice is heard, consider joining our survey initiative. Learn more about our Surveys here.